UK Testing and length of Gluten Challenge

[Hev75]

Hi - I'm new to this and so if I'm posting this in the wrong place, please let me know. I was tested for Coeliac last year after a second degree relative tested positive and I began to research what Coeliac disease is. I realised I ticked a lot of the boxes. So I contacted my GP and I went in for a raft of blood tests - diabetes, thyroid, iron etc. All were ok - iron was low normal. The Coeliac test was negative, but I was NOT advised prior to the test that I should be eating plenty of gluten. I've since done lots of research and realise that I may have not been eating enough - the doctor just agreed to have me tested but didn't give me any advice prior. I'd already tried a bit of gluten free eating, had already cut back on things like bread, so I definitely wasn't eating gluten every single day. Could this have affected the test significantly? 

It was the standard 'Tissue transglutaminase IgA level (XaJg2)' test which came in at <1 u/ml. So I took that as the definitive result and just carried on as normal. But I've still continued to have symptoms and then also started breaking out in hives last year which have continued every few days. So... earlier this year I started keeping a food diary and I eliminated diary first and then gluten a couple of weeks later. I've gone through some terrible aches and headaches since coming off the gluten, but have noticed that I'm not bloating quite as much and my BM have have started to improve. I've been gluten-free for over a month now, but I want to start reintroducing it, so I can see what effect it has and so I can request another test. My question is - how long would I need to eat gluten again and how much daily before going back to my doctors? If I have a really bad reaction once I reintroduce it, then I'll speak to my GP sooner rather than later, but I wondered if there is a guide as to how long is the best time to consume it again, after being gluten-free for about 5 weeks already.

Thanks. 

[trents]

For the serum antibody tests you need to be eating the equivalent of 1-2 slices of wheat bread daily for 8 weeks prior to the test. For the endoscopy, the gluten challenge period is shorter, two weeks.

You should have your physician order a "full celiac panel." The TTG is the most specific for celiac disease but the least sensitive. The full panel would include the "other" tests as outlined in this article: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[Hev75]

Thank you for the advice.

So where you say 1-2 slices of wheat bread daily - if, for example, I'd eaten toast for breakfast one day, with a sandwich for lunch and then a pizza for supper (so basically maximised gluten intake one day), but then didn't consume any gluten the day after - could that missed day potentially affect a test result or would the amount I'd consumed the day before effectively carry over to the next day? Sorry that all sounds like an odd question, but I know that in my normal diet, I might not necessarily eat gluten everyday and wondering if a 'hit and miss' consumption of gluten might affect a blood test?

[trents]

Sorry, but I can't answer your question with any authority. What I can say is that when we get "glutened" the inflammation caused lasts more than a day. It can take weeks for your gut to recover from one incidence of glutenning. But nevertheless, you should adjust your eating habits to get some gluten every day until the test.

[Scott Adams]

Here is an article on the gluten challenge:

 

[Gemak]

Hi Trevva,

I’m day 17 in to a gluten challenge here in the uk so I thought I’d share my info. In the uk it’s typically a 6 week gluten challenge, the uk coeliac organisation say you need to eat about 10 grams of gluten a day (there are videos on the coeliac.org for advice). I think thats roughly 4 pieces of bread a day but I can’t eat that, so I’ve used the grams of protein on the label of the back of the bread product to give me a guide as I read somewhere that that was a rough guide to gluten content but I may be wrong. Like you I didn’t eat much gluten before hand but I now have shop bought bagals, crumpets etc so I can be sure I’m getting roughly ten grams, and since ramping it up I’m feeling pretty rough. I did a test initially that came back negative, I’m going to request that as well as an TTG IGA that I have my blood screened for TTG IGG (I think that’s right) or a IGA deficiency test too, I’m also hopeful of getting my rash tested as that can be coeliac specific. On researching I don’t seem to be able to find any clear difference of symptoms between gluten sensitivity and coeliac which I find frustrating, you’d think as one is an attack on the body and the other is not that the symptoms would differ. I don’t mean to put you off but I’m struggling at the moment, I can’t walk around the block easily like i used to, it’s not that I’m out breath as such i just feel slow like I’m walking in treacle, I’m instantly lightheaded after eating gluten and stammering my words as well as itchy skin and all the usual stomach problems which alone are bad enough. I’m determined I’m going to see it through though, I usual bake regularly and I want to know if I can bake or eat out without causing physical harm to myself, we handle a lot of flour in my home. I’m sad to say I also want to know because if I am coeliac I need a diagnoses for family and friends to take it seriously. 

[morganastar]

I am also gluten challenge-ing at the moment (Day 10 of the UK 6 weeks one, though blood test booked in for 20th April so might end up a bit longer). I have decided to go quite full in with ensuring I am having gluten every day, a couple of times at least, and I feel rough. Even if the blood test dont show coeliac then I am like 99% sure it is something gluten related and really don't think I will be carrying on eating this after they look at my blood!

[Hev75]

Hi - thanks for all the responses. It's really helpful. Four slices of bread is definitely a lot for me and I don't think I've achieved that daily for years. I try to eat healthily and so naturally don't eat a lot of refined or processed foods and we're more likely to sit down to a meat and veg meal than a pasta laden meal, so it's really hard for me to eat that much gluten. I'm planning on re-introducing it this weekend so we'll see how it goes. 

I know what you mean about the minute differences between having a gluten sensitivity and full blown coeliac. A family member was diagnosed last year and we have a lot of autoimmune issues in our family, which makes me think there may be something in it. I also had a very bad stomach bug back in 2019 and that's when I really started to notice a change. I've not felt 'quite right' for years, but I just put it down to a busy life and kids etc.. It's also been the hives which started last year that made me start to look into it again. The doctors were very quick to dismiss it as a change of washing powder or something I'd just eaten. But it's been 10 months now and they still keep popping up. Looking back there are so many things that might be indicators - I bruise easily, my BM's have always floated, I've had a gurgly stomach for years, I've had bouts of anaemia (period related so I thought - yes I'm a female - don't let the nickname fool you 😊). I had an episode of strange little blisters on my fingers and hands about ten years ago (not sure if that is connected as I can't recall having them since) I think I also had some hives around that time too. Then nothing until last year. But the blisters I had, did look like some of the DH pictures I've seen online. 

Anyway, I'm quite excited to have a slice of toast again, but nervous of how it's going to make me feel. 

[trents]

8 hours ago, Gemak said:

 I’m determined I’m going to see it through though, I usual bake regularly and I want to know if I can bake or eat out without causing physical harm to myself, we handle a lot of flour in my home. I’m sad to say I also want to know because if I am coeliac I need a diagnoses for family and friends to take it seriously. 

Non celiac gluten sensitivity can also cause harm to your body, so I think you have a false hope to the effect that if you do not have celiac disease you can consume gluten, put up with some symptoms but not harm your body. Among other things, you risk neurological damage in that scenario.

[Scott Adams]

10 hours ago, morganastar said:

I am also gluten challenge-ing at the moment (Day 10 of the UK 6 weeks one, though blood test booked in for 20th April so might end up a bit longer). I have decided to go quite full in with ensuring I am having gluten every day, a couple of times at least, and I feel rough. Even if the blood test dont show coeliac then I am like 99% sure it is something gluten related and really don't think I will be carrying on eating this after they look at my blood!

Welcome to the forum! I hope your symptoms are not too severe. 

[morganastar]

On 3/11/2021 at 6:34 PM, Scott Adams said:

Welcome to the forum! I hope your symptoms are not too severe. 

Thank you!! Things aren't too bad, though my stomach is definitely not too happy about the situation (though I am thanking God for working from home and strechy trousers!) Also I guess one plus of the challenge being 6 weeks is my Birthday is within that time, so although I might feel bad, I might get to have a big yummy vegan Birthday cake (to make sure the blood test works, not just because it will be delicious of course! ) and then me hours later will have to deal with the consequences!

[Hev75]

So I'm day 6 of eating gluten again and I've had the worst headaches I've had in weeks and also I seem to be getting stomach pain as well as the usual bloating. Well, when I say pain, it's like little stabs of pins and needles on the inside. Is this normal? It varies from left to right and it's generally on the lower half. I've not really had these before so not sure if it's related to the fact I'm eating gluten again as I didn't get them before - I was 6 weeks off gluten to test it. I tried googling pins and needles feeling in the stomach but it just comes back with hands and feet. It's not a searing pain but it's enough for me to stop and become aware of it - sometimes feels like a period type cramp, which I've not had for a couple of years after having an IUD fitted. Could I be experiencing different symptoms due to cutting out the gluten for a while. Have I kick-started another symptom??

Also feeling a little sickly, but I think that's because I'm forcing myself to eat more bread which is way more than normal for me. And I just generally feel flushed, tired, rubbish and not clear minded at all. I also had hot itchy red feet last night and I've become conscious of scratching my shoulders again which I've done for ages, not thinking anything of it and just put it down to a bit of sun damage, but I've realised that I've not really felt them itch at all while I was abstaining from gluten. Could there be something in that? I can't really see a rash, but dry skin. 

Generally feeling a bit pants right now! And week one of the challenge isn't even done yet 🥴

[Scott Adams]

Going gluten-free for a while, then adding it back can cause more severe symptoms for many celiacs. There seems to be a percentage of us that get super sensitive after going gluten-free for a time. 

Not to discourage you, but you must weigh out for yourself the value of the end goal here, which is a formal diagnosis--it sounds like you already know what that diagnosis will be, and even if your test results should end up inconclusive or negative, it sounds like you would still be in the gluten sensitive category, for which there are currently no tests, yet the prescription for both celiac and gluten sensitivity is a gluten-free diet for life.

Ok, enough discouragement...I guess what I was trying to say is that I hope that the end goal is worth all of this! Have a Big Mac at McDonald's for me...ok, may NOT! 😅

[Hev75]

I know what you mean, but I think for me it’s knowing for definite one way or another and I’m not one for giving up easily. At least If I know then I can manage people’s expectations as well as my own. 

To be honest I’ll not miss McDonald’s if I have to give it up 🥴 (maybe a tiny bit!) I’ll persevere and report back 😊

[Gemak]

12 minutes ago, Trevva said:

So I'm day 6 of eating gluten again and I've had the worst headaches I've had in weeks and also I seem to be getting stomach pain as well as the usual bloating. Well, when I say pain, it's like little stabs of pins and needles on the inside. Is this normal? It varies from left to right and it's generally on the lower half. I've not really had these before so not sure if it's related to the fact I'm eating gluten again as I didn't get them before - I was 6 weeks off gluten to test it. I tried googling pins and needles feeling in the stomach but it just comes back with hands and feet. It's not a searing pain but it's enough for me to stop and become aware of it - sometimes feels like a period type cramp, which I've not had for a couple of years after having an IUD fitted. Could I be experiencing different symptoms due to cutting out the gluten for a while. Have I kick-started another symptom??

Also feeling a little sickly, but I think that's because I'm forcing myself to eat more bread which is way more than normal for me. And I just generally feel flushed, tired, rubbish and not clear minded at all. I also had hot itchy red feet last night and I've become conscious of scratching my shoulders again which I've done for ages, not thinking anything of it and just put it down to a bit of sun damage, but I've realised that I've not really felt them itch at all while I was abstaining from gluten. Could there be something in that? I can't really see a rash, but dry skin. 

Generally feeling a bit pants right now! And week one of the challenge isn't even done yet 🥴

Hi Trevva, I’m currently on day 23 of my gluten challenge and I can tell you that the sharp pains in the stomach, headaches,  foggy slowness and the scratching are symptoms I’ve experienced during this challenge. I trimmed my nails earlier this week because I’d taken skin off my shoulders, elbows, upper legs and feet. It’s ridiculous really that we have to do this, I’ve adjusted the gluten I eat this week to a crumpet in the morning and a pitta bread for lunch, I estimate that’s a little over 8g of gluten, I was eating way to much previously (bagels I’ve found are gluten heavy, this may just be me of course) and I had to phone the doctor because I was slurring and stuttering words. It feels this week that along with the scratching has calmed down just a bit but I have got to the point now where I can’t eat a meal anymore I have to eat little and often because my stomach can’t cope. I found the best way I’ve got through this is taking it a day at a time, I’ve booked my test too which gives me something to aim for, it may also be worth adjusting or reducing the type of gluten product your eating some seem higher in gluten than others. 

[BThompson]

On 3/11/2021 at 9:36 AM, Trevva said:

Hi - thanks for all the responses. It's really helpful. Four slices of bread is definitely a lot for me and I don't think I've achieved that daily for years. I try to eat healthily and so naturally don't eat a lot of refined or processed foods and we're more likely to sit down to a meat and veg meal than a pasta laden meal, so it's really hard for me to eat that much gluten. I'm planning on re-introducing it this weekend so we'll see how it goes. 

I know what you mean about the minute differences between having a gluten sensitivity and full blown coeliac. A family member was diagnosed last year and we have a lot of autoimmune issues in our family, which makes me think there may be something in it. I also had a very bad stomach bug back in 2019 and that's when I really started to notice a change. I've not felt 'quite right' for years, but I just put it down to a busy life and kids etc.. It's also been the hives which started last year that made me start to look into it again. The doctors were very quick to dismiss it as a change of washing powder or something I'd just eaten. But it's been 10 months now and they still keep popping up. Looking back there are so many things that might be indicators - I bruise easily, my BM's have always floated, I've had a gurgly stomach for years, I've had bouts of anaemia (period related so I thought - yes I'm a female - don't let the nickname fool you 😊). I had an episode of strange little blisters on my fingers and hands about ten years ago (not sure if that is connected as I can't recall having them since) I think I also had some hives around that time too. Then nothing until last year. But the blisters I had, did look like some of the DH pictures I've seen online. 

Anyway, I'm quite excited to have a slice of toast again, but nervous of how it's going to make me feel. 

Hi there, I’ve been gluten-free now for 26 years.  I went through many tests and went back to eating gluten to get a test, but eating the gluten made me so ill that I only managed it for a couple of days.  None of the tests showed full blown celiac disease but my doctor agreed I was most probably gluten sensitive/intolerant and I have followed a strict diet ever since.  Recently I have been reading how trauma often from our childhood is probably what sets off these auto immune diseases.  The trauma doesn’t have to be major it can be quite small but significant to the person who it happened to.  I have been doing a lot of work recently on releasing past traumas and I am finding that I am able to eat many foods in small quantities that I have not been able to eat for years.  I haven’t tried reintroducing gluten foods as I typically don’t get on well with Carbs anyway and I eat a very low carb/keto style diet which suits me fine.

If you are having skin problems and hives you are probably Eczema sensitive.  Most people who are prone to skin conditions are usually gluten and dairy intolerant too.  2 years ago I went through a horrible time where my face was covered in Eczema, I managed to clear it by following the Eczema Diet.  It is amazing, the book The Eczema Detox by Karen Fischer (available on Amazon) is great and will take you through the programme and has great recipes; within in 2 weeks of starting the diet most of my eczema had cleared up and has never returned.

I would strongly recommend looking at your emotional history from childhood and doing some emotional work to free your body from the traumas it might be holding onto.  A lot of research is being done into how much emotional trauma plays a part in many of our modern day auto immune diseases and I really think our emotions play a huge part on our physical well being.  I hope this helps and I wish you all the best on your healing journey and path to radiant health. Best wishes Bronwen 

 

[Scott Adams]

Welcome to the forum @BThompson! Trauma can definitely cause lots of stress for many people, which is never good. We summarized some research here on this, but it is highly doubtful, and I've not seen any evidence yet, that celiac disease or any other autoimmune disease can be cured via mental therapy, although it may certainly help those affected to lower stress:

Eczema is can also be related to celiac disease, so you may want to re-check your diet to make sure no gluten is getting into it.

[BThompson]

4 minutes ago, Scott Adams said:

Welcome to the forum @BThompson! Trauma can definitely cause lots of stress for many people, which is never good. We summarized some research here on this, but it is highly doubtful, and I've not seen any evidence yet, that celiac disease or any other autoimmune disease can be cured via mental therapy, although it may certainly help those affected to lower stress:

Eczema is can also be related to celiac disease, so you may want to re-check your diet to make sure no gluten is getting into it.

Check out Veronique Mead’s Chronic Illness Trauma Studies Blog - where she talks about the huge amount of studies being done in this field and her own experience of healing herself from ME and other symptoms working with trauma therapy.  In my own case I know that my celiac symptoms were triggered when I had a nasty fall and ended up with serious concussion, after this event I started showing very definite and debilitating symptoms initially to wheat then it progressed to all gluten products and I also became lactose/casein intolerant too.  As I have had further traumas many other food intolerances have slowly appeared over the years.  Linking the body with the mind is not something that mainstream doctors understand or are willing to investigate, but we are a “whole” and everything physical, emotional and psychological interacts. If you look at work using the therapy Internal Family Systems (IFS) a therapy discovered by Dick Schwarz it highlights how parts of our internal systems will hold onto trauma way beyond the point of recovery and only when learn how to release and let go of these past traumas can we free our bodies.

Given our modern day lives where we are subject to constant stresses from so many different sources, our 24/7 lifestyles, highly processed food manufacturing, environmental pollutants and the growing numbers of people affected by food allergies/intolerances, one must certainly look seriously into the effects of trauma/stress and 21st Century living on our long term health and its role in auto immune diseases such as celiac and gluten intolerance/sensitivity.

[Scott Adams]

We're kind of off this topic a bit, but should any of their trauma work on celiac disease get published in peer-reviewed medical journals we'll likely summarize it on this site, as we did with the stress-related disorders and autoimmune study. Thanks for the info.

[Hev75]

13 hours ago, BThompson said:

Hi there, I’ve been gluten-free now for 26 years.  I went through many tests and went back to eating gluten to get a test, but eating the gluten made me so ill that I only managed it for a couple of days.  None of the tests showed full blown celiac disease but my doctor agreed I was most probably gluten sensitive/intolerant and I have followed a strict diet ever since.  Recently I have been reading how trauma often from our childhood is probably what sets off these auto immune diseases.  The trauma doesn’t have to be major it can be quite small but significant to the person who it happened to.  I have been doing a lot of work recently on releasing past traumas and I am finding that I am able to eat many foods in small quantities that I have not been able to eat for years.  I haven’t tried reintroducing gluten foods as I typically don’t get on well with Carbs anyway and I eat a very low carb/keto style diet which suits me fine.

If you are having skin problems and hives you are probably Eczema sensitive.  Most people who are prone to skin conditions are usually gluten and dairy intolerant too.  2 years ago I went through a horrible time where my face was covered in Eczema, I managed to clear it by following the Eczema Diet.  It is amazing, the book The Eczema Detox by Karen Fischer (available on Amazon) is great and will take you through the programme and has great recipes; within in 2 weeks of starting the diet most of my eczema had cleared up and has never returned.

I would strongly recommend looking at your emotional history from childhood and doing some emotional work to free your body from the traumas it might be holding onto.  A lot of research is being done into how much emotional trauma plays a part in many of our modern day auto immune diseases and I really think our emotions play a huge part on our physical well being.  I hope this helps and I wish you all the best on your healing journey and path to radiant health. Best wishes Bronwen 

 

Hi - I lost my Dad just after my first child was born - so my hormones were all over the place anyway, as well as dealing with the grief, so it's possible that was the trigger and this has been coming on slowly for a while. I guess the excessive tiredness I just put down to being a new parent, but I've never really felt 'not tired' since then, even though they're both now teenagers! The stomach bug I had 18 months ago may have just then propelled it to full on GI symptoms. I'm just hoping I get some answers soon.

[trents]

16 hours ago, BThompson said:

. . . Linking the body with the mind is not something that mainstream doctors understand or are willing to investigate, but we are a “whole” and everything physical, emotional and psychological interacts. .  .  .

I think it's fair to say most mainstream doctors do understand there is a connection between mind, body and spirit. I don't know any that would deny that. It's just that they aren't well trained to, nor have the time for, nor get paid for exploring that in depth at this point in time. But they aren't oblivious to it. That would be unfair to say.

[Scott Adams]

7 hours ago, Trevva said:

Hi - I lost my Dad just after my first child was born - so my hormones were all over the place anyway, as well as dealing with the grief, so it's possible that was the trigger and this has been coming on slowly for a while. I guess the excessive tiredness I just put down to being a new parent, but I've never really felt 'not tired' since then, even though they're both now teenagers! The stomach bug I had 18 months ago may have just then propelled it to full on GI symptoms. I'm just hoping I get some answers soon.

I too got full blown celiac disease directly after getting a serious stomach but while travelling in England. I thought it was food poisoning at the time, but it certainly could have been a virus like rotavirus. Interestingly, rotavirus has been linked as a possible trigger for celiac disease:

https://www.celiac.com/search/?&q=rotavirus&type=cms_records2&search_and_or=and&search_in=titles 

[Hev75]

Hello - just dropping back in onto this thread - wasn't sure what the etiquette was and whether I should start a new thread. So, I'm nearly three weeks into the gluten challenge and I'm feeling pretty pants I'll be honest. I'm trying to get the minimum amount into me every day and I'm managing it thankfully. But the niggly stomach cramps and aches are still there (which I didn't really have before the challenge) and I just wanted to ask whether they can usually be felt in different locations all at once if that makes sense? Would they normally be felt in one location and then move around? Or can you feel little stabbings of discomfort in various locations. It has sometimes felt like a menstrual cramp, so lower down and then other times it's above my belly button and can be central, left or right. Is this normal? I think at the moment my body is wondering what the hell is going on 😐

I've also been very itchy on my shoulders and just below my neck which I'm trying to monitor. I have a lot of moles, so it's difficult to tell from looking in a mirror if they're spots, blisters or moles, but I can definitely see that some areas of my skin are inflamed. I've read that DH doesn't always present itself with the GI symptoms, but is this possible as the years progress without a diagnosis? Also I've definitely had blisters on my hands before (about 10-12 years ago) as I remember at the time Googling it and panicking thinking I had hand, foot and mouth disease but they eventually disappeared. As I've thought back over the years I've sometimes had them on my elbows too and they were very itchy. If this were DH, could it disappear for several years and then come back? 

[morganastar]

Hi Trevva, Sorry to hear that you are feeling rubbish! Gotta say, me too!

Though not going to lie, I am probably eating more than the minimum, and that is probably my own fault, but on my birthday last week I though f*** it, if this might be my last gluten Birthday I am going to enjoy myself, so my boyfriend and I ordered a vegan takeaway (a vegan meat replacement in a burger bun and I had also had a slice of gluten birthday cake the same day) it was all very delicious, until probably an hour or two later the stomach cramps and 'head in a vice' headache began, so naturally I lay on the floor to get more comfy, when suddenly realised I was going to be sick and spent the next hour throwing up, shivering, headache, stomach cramps. Argh! What a rubbish way to end my 30th birthday!

I (thought) I had never had a reaction this strong before, but my boyfriend reminded me that Summer last year (during 'eat out to help out') we went to a vegan place, had a burger (again in a bread bun, with some cake earlier in the day) and later in the day I was throwing up for ages, but I just thought it was a coincidence, now I am obviously not sure. Before the gluten challenge and celiac disease was suspected I didn't usually eat bread anyway because of how bloated it made me, but it seems as these 6 weeks goes on, the more I eat gluten, the worse it is making me feel? I have a constant headache and am SO TIRED (and my skin is noticably itchier too, but no marks really so can't comment on dh) . 20 days until the blood test (and counting). Hope we can both get it sorted out!

[Hev75]

I also had a birthday the first weekend of eating gluten again - kind of planned it that way! 🙂 So I was definitely hitting the ground running with the gluten. I've not been sick, but have felt nausea on several occasions which is also quite new. I've had some banging migraines, where I've even had to have my other half massage my head... it was that bad. I'm getting dizzy - which I did have a bit before - I'm also naturally clumsy but I seem to be more so at the moment, dropping things all the time.

I've always had dry skin, but it seems extra dry the last three weeks. I also had a period this week which is the first proper one I've had since having a IUD fitted three years ago (after it all settled down). So that was odd as well, but I've read that due to the inflammation that celiac disease causes it can affect your periods and make them heavy. I've always suffered with heavy periods and was treated twice for Endometrial Polyps before having the IUD fitted, but I'm now thinking that it might have been made worse by possible inflammation and that these new symptoms my body is experiencing might also be affecting my menstrual issues which had albeit vanished during the last 2-3 years. The plot thickens. I've also scared myself stupid as my maternal Grandad died of bowel cancer and a couple of my paternal female cousins died of cancer (one started in the bowel and then spread) and another has just gone through treatment for Malt Lymphoma Cancer. Sometimes Google should be avoided! 😐